1. The deep ties between Patient Groups and Industry
One of the last bills passed under President Obama was the 21st Century Cures Act, which was purportedly meant to expand biomedical research and increase the speed by which new drugs reach patients (see my opinion on it here). The drafting of the act was an epic battle between 1400 lobbyists from the pharmaceutical industry, academia, and patient groups, all seeking for the bill to do the most to represent their interests. When one group is a major funder of another, potentially oppositional, group, the utility of the lobbying system breaks down. It is troubling to think that patient groups may have deep ties to industry, potentially supporting legislation not for the benefit of the patients they supposedly advocate for, but for the pharmaceutical industry itself.
Patient groups are supposed to represent patients. But many have deep ties to industry.
More than eight in 10 patient groups take money from the medical industry.
2. Remembering the fraught history of politics and science
I continue to struggle with my thoughts on the upcoming March For Science. I have trepidation towards associating science with anything that leans towards partisanship. I think that some parts of modern science have already fallen too far into the political spectrum, and I worry about the actual belief in the scientific method and empiricism following suit.
This article by Britt Rusert does a great job of putting these worries in perspective. Science has a long and fraught history of being enmeshed in politics while being abused by the privileged to gather and maintain power (detailed well in this fantastic article you should also read).
In Rusert’s article (and upcoming book detailing the African American movement against scientific racism), she discusses the struggles of black abolitionists to gain scientific knowledge while being excluded from scientific and educational institutions, and to apply science in their activism and struggle for emancipation. It is an important reminder of the history of science in activism and politics, and of the antebellum black science activists who were fierce advocates of the role of science in social justice at much greater risk to themselves than the science march would be to me.
The Science March Owes a Debt to Antebellum “Fugitive Scientists”
We typically associate marches with social movements and political demands, not with scientific objectivity and neutrality. But on April 22, Earth Day, …
3. Tim Ferris interview with John Crowley
I wrote earlier this week about President Trump using Pompe Disease survivor Megan Crowley as a prop for espousing his desire to cut regulation. This is a fascinating interview with her father, John Crowley. Crowley talks about the experience of being a father to two children with genetic diseases, and describes the process of biotech entrepreneurship and drug discovery. As the private sector delves more and more into research and research funding, I found the opinions of a non-scientist involved in biomedical research enlightening. On a more personal front, his descriptions of balancing his conflict of interest as a father of a patient with his desire to get his children into clinical trials is fascinating and painful, and a demonstration of how important it is to listen to voices of patients as well as medical/scientific professionals. It also (in my mind at least), further cements the need for ethics professionals in science research, as discussed in one of the articles I posted last week.
John Crowley — The Real-Life Captain America and Bruce Banner (Seriously)
This is an incredibly powerful episode of the podcast. John F. Crowley is the Chairman and CEO of Amicus Therapeutics, a publicly traded biotechnology company, which he helped found in 2005 and is …